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transcript
MINDSET: Management Information &
Decision Support Epilepsy Tool
Dec 4th, 2011
Ross Shegog, Ph.D., Charles Begley, Ph.D.
University of Texas School of Public Health
Prevention Research Center
American Epilepsy Society | Annual Meeting
Disclosure
Name of Commercial
Interest
N/A
Type of Financial
Relationship
N/A
American Epilepsy Society | Annual Meeting
Learning Objectives
1. Describe basic steps in decision support system development
2. Describe useful behavioral theory and frameworks to guide epilepsy self-management decision-support.
3. Describe key components in clinic-based epilepsy decision support
American Epilepsy Society | Annual Meeting
This research was funded by a Special Interest Project (SIP09-12) Grant from the Centers for Disease Control and Prevention (Award number: 1U48DP000057-01).
Begley C, Shegog R, Iyagba B*, Chen V, Talluri K*, Dubinsky S, Newmark M, Ojukwu N, Friedman D. Socioeconomic status and self-management in epilepsy: Comparison of
diverse clinical populations in Houston, TX. Epilepsy & Behavior. 2010, 19 (3), 232-238. PMID: 20884301
DiIorio CK, Bamps YA, Edwards AL, Escoffrery C, Thompson NJ, Begley CE, Shegog R, Clark NM, Selwa L, Stoll S, Ciechanowski P, Fraser RT, Johnson EK, Kobau R, Price,
PH. Managing Epilepsy Well Network. The prevention research centers‘ managing epilepsy well network. Epilepsy & Behavior. 2010, 19 (3), 218—224. PMID: 20869323
• Epilepsy self-management (MEW, CDC SIP08-06 - PI. Begley, Shegog) • Technology apps DSS in clinical practice
• Emergence of self-management – translation to practice – MEW network
Background
Emerging Epilepsy E-Management Tools
• EpiTracks • My Seizure Tracker • My Epilepsy Diary • Patients Like Me • WebEase • Project Uplift
Aims
1. Develop a ‗proof-of-concept‘ of a Management
Information & Decision Support Epilepsy Tool
(―MINDSET‖) to provide real-time self-management
decision-support to patients and health care
providers in specialty neurology clinics.
• Enhance patient awareness about self-management
• Immediate feedback on management issues
• HCP cues to management issues
• Patient-provider communication
• Self-management goal-setting
2. Evaluate the usability and feasibility of this strategy.
Knowledge acquisition and engineering Inductive knowledge acquisition 1. Patient-provider advisory group (PPAG) ongoing 2. Clinic task analysis 3. Empirical investigation of the association of self-management antecedents
(e.g. self-efficacy/social support with self-management behavior) – SIP09-06 (PI’s Begley, Shegog)
Deductive knowledge acquisition 4. Published quality care measures for epilepsy management 5. Theories and models from chronic disease management
• Social Cognitive Theory • Motivational Interviewing/Enhancement protocols • 5A’s Model
6. Matrix of change objectives (Intervention Mapping)
Development Steps
1. Patient-provider Advisory group (PPAG)
Ross Shegog, PhD1, Michael Newmark, MD2, Charles Begley, PhD1, Bibele Iyagar1, David Friedman, MD3 ,
Stephanie Dubinsky, MPH2, Nikki Ojukwu 3,
Not pictured: Angelique Harding1, Drs. Hope and Goldsmith
1The University of Texas School of Public Health, 2Kelsey-Seybold Clinic, 3Ben Taub General Hospital
Ben Taub Clinic Flow Chart Kelsey Seybold Clinic Flow Chart
2. Clinic Task Analysis
Self-efficacy and social support had the strongest correlation with self-management among the psychosocial factors for all patients and for patients at each site.
Self-Management Sub-Scales Correlation Coef.
(Sig P value)
BT
(Sig P value)
KS
(Sig P value)
Med Management .55 (.00) .58 (.00) .58 (.00)
Info Management .75 (.00) .70 (.00) .76 (.00)
Safety Management .61 (.00) .66 (.00) .59 (.00)
Seizure Management .66 (.00) .62 (.00) .70 (.00)
Lifestyle Management .68 (.00) .76 (.00) .63 (.00)
Psychosocial Factors
Knowledge .15 (.02) .24 (.04) .05
Self Efficacy .27 (.00) .43 (.00) .31 (.00)
Outcome Expectation .11 .29 (.01) .07
Control -.02 -.03 .02
Social Support .19 (.00) .30 (.01) .20 (.00)
Depression -.06 -.37 (.00) .01
Stigma .077 -.06 .09
Patient Satisfaction -.04 -.21 -.09
3. Empirical Investigation
# Epilepsy measures aproved by AAN and the PCPI 1 Patient-identified indicators for adults with epilepsy 2,3
1 Seizure type and current seizure frequency Provide patients with references to information about epilepsy through the
epilepsy foundation and/or epilepsy Websites
2 Documentation of etiology of epilepsy or epilepsy syndrome Provide information about the impact of epilepsy and its treatment or other
health conditions
3 EEG results reviewed, requested, or scan ordered Communicate with patients about potential medication side effects, including
cognitive, emotional, physical, and sexual side effects
4 MRI/CT scan reviewed, requested, or scan ordered Discuss potential long-term side effects of medications
5 Querying and counelling about antiepileptic drug side effects Explain epilepsy repeatedly as many patients have memory loss
6 Surgical therapy referral consideration for intractable epilepsy Discuss driving with patients including giving information about alternative
transportation to patients who cannot drive
7 Counseling about epilepsy specific safety issues Give referrals to social services to assist with employment, negotiating
through SSDI
8 Counseling for women of childbearing potential with epilepsy Discuss impact of epilepsy and treatment on women‘s health with respect to
menstral cycles, conception, pregnancy, and menopause.
9 Be honest with patients about the inexact science of epilepsy treatment and
that there may be multiple trials of medication combinations before they find
out what works best for individuals
10 Refer patients to local support groups or other resources to obtain
psychosocial support
Sources:
1. Fountain NB, Van Ness PC, Swain-Eng R, Tonn S, Bever CT. Quality improvement in neurology: AAN epilepsy quality measures. Report of the Quality
measurement and Reporting Subcommittee of the American Academy of Neurology. Neurology, 2011, 76(4), 94-99
2. Pugh MJV, Berlowitz DR, Montouris G, Bokhour B, Cramer JA, Bohm V, Bollinger M, Helmers S, Ettinger A, Meador KJ, Fountain N, Boggs J, Tatum
WO, Knoefel J, Harden C, Mattson RH, Kazis L. What constitutes high quality of care for adults with epilepsy? Neurology, 2007, 69 (20), 2020-2027.
3. Pugh MJ, Berlowitz DR, Rao JK, Shapiro G, Avetisyan R, Hanchate A, Jarrett K, Tabares J, Kazis LE. The quality of care for adults with epilepsy: An
initial glimpse using the QUIET measure. BMC Health Services research, 2001 11(1). http://www.biomedcentral.com/1472-6963/11/1.
Also consistent with:
4. Living Well With Epilepsy II. Report of the 2003 national Conference on Public Health. Priorities for a Public Health Agenda on Epilepsy. Self-
management recommendations.
5. The Center for Managing Epilepsy Well: Contributing to managing Epilepsy Well. Key informants perspectives, University of Michigan, 2010.
4. Quality care criteria
PRECEDE model for epilepsy self-management illustrating the association between
predisposing, enabling, and reinforcing factors, self-management behavior, and health & quality
of life outcomes.
Predisposing Factors
Anxiety/depression
Stigma
Alcohol and/or illicit drug consumption
Number of dosages
Knowledge of epilepsy
Perceived impact of epilepsy on
employability
Risk aversion
Time perspective
Financial support
Number of persons living with respondent
Social support
Self-efficacy
Outcome expectations
Fear of seizures
Enabling Factors
Medical care affordability
SES
Reinforcing Factors
Drug side effects – number and severity
Waiting times
Responsiveness of care
Communication with family by health care
team.
Reinforcement from family and self.
Self-Management Behaviors
Treatment management
Keep regular well visit health care appointments
Maintain chronic AED medication as prescribed
Seizure management
Call health care professional in an acute situation
Communicate with family members, health care
providers
First aid activities - recognizing status epilepticus
Life management
Changing lifestyle to avoid seizures – ―normal‖ sleep
levels; reduce stress (emotional and physical); avoid
triggers of alcohol, drugs, OTC meds, caffeine; keep
hydrated, avoid heat; control allergies; avoid hypo-
glycaemia; avoid blinking lights.
Planned disclosure to others
Develop a social support network
Develop linkage to resources
Health Outcomes
and Quality of Life
Seizure frequency
Perceived impact of
epilepsy on everyday life
General health
ER visits
Hospitalization
Functional Status
Sources: Kelsey Seybold Epilepsy Education Program, 200510 Buelow JM, 200111 ; Shope JT, 198812; DiIorio et al.,
200413; Levine et al., 199414; Devinsky et al., 199985; Cowan et al., 200486; Sabaz et al., 200387; Toshio et al., 199688; McEwan et al.,
2004113; DiIorio et al., 199415; DiIorio et al., 199216; DiIorio et al., 199217; May et al., 200239; Tedman et al., 199518; Anderson et al., 198919;
Austin et al., 199894; Cramer et al, 199995; Westbrook et al., 199220; Austin et al., 200289; Dunn et al., 1999112; Jones et al., 200521; Brandt et
al., 198122; Weinhert et al., 198723; Marshall et al., 199324; Ramaratnam et al., 200527; McLeod et al., 200325.
5. Theory & Models: PRECEDE
Selected Constructs Operationalized by … Epilepsy self-management
behavior: Medication / Information / Safety Seizure / Lifestyle
Epilepsy Self-management Scale (DiIorio C, Faherty B, Manteuffel B. Res Nurs Health 1994;17:167-174) and self-regulation model (Clark, 2001) E.g. I take my seizure medication the way my doctor orders it. Response: Never – Always
Self-management self-efficacy Epilepsy Self-management Self-efficacy Scale (Dilorio C, Faherty B, Manteuffel B. J Neurosci Nurs, 1992;24:9-13) E.g. How SURE are you that you can … Take your medicine the way your doctor has ordered it? Response: Not sure – very sure
Negative affect / depression Neurological Disorders Depression inventory for Epilepsy (NDDI-E) Screening Tool (www.EpilepsyFoundation.org) (Friedman, 2009, Gillam, 2006; Friedman et al, 2010 ) E.g. Nothing I do is right. Response: Always – Never
Adverse events Epilepsy Adverse Events Profile (Perucca, 2010; Panelli, 2007; Gillman, 2004; Abetz, 2000). 19-item scale; Total score range form 19 – 76;
E.g. During the last 4 weeks, have you had any of the problem listed? Response: Never a problem - Always a problem
6. Theory & Models: Constructs …
Decision rules from application of motivational interviewing: importance,
confidence.
Source: Velasquez, 2004.
6. Theory & Models: Motivational Enhancement
5 A‘s Behavior Change Model has been adapted for Self-Management
Support Improvement in the clinical encounter
Data Input from patient
HCP confirms data, determines scores and stage
HCP – next visit date and goals.
HCP motivational interviewing
Example: Reinforcement, Empathy, Reflective listening
ASK
ASSESS
ADVISE
ASSIST
ARRANGE
HCP helps patient set a quit date, advises on
medications, and provides materials.
Source: Glasgow, 2002; Sheridan, 2004.
6. Theory & Models: 5A‘s Model
Objective covered by MINDSET Objective partially covered by MINDSET Objective not covered by MINDSET
ASSESS
CCM element: Have patient periodically complete valid health
behavior surveys and provide them with feedback.
Patient Level (patient-
provider interaction)
Office Environment
(standard operating
procedure)
Try brief behavior survey in a)
waiting room, b) on computer.
Select or develop Health
Risk Assessment (HRA)
survey.
Assess patient knowledge
about their chronic condition.
Employ conviction and
confidence rulers.
Ask patient, ―what about Self-
Management (SM) is most
important to talk about
today?‖
Revise self-care surveys to
make
appropriate.
- Ask patient, ―what are your
most challenging barriers?‖,
recognizing physical, social
and economic barriers.
Add fields to the medical
record to
record behavior status for
smoking; weight, exercise.
Provide patient with
personalized feedback and
results.
Add behaviors to the
problem list for
patient.
Assess conviction and
confidence regarding target
behaviors.
Prompt staff to collect or
update key
behaviors status at each
visit.
Have computer in waiting
room for
HRA assessment with print
outs for
providers and/or patients.
Employ outreach and
population-based approach
to assess all patients across
multiple chronic illnesses.
Pilot approaches to providing
feedback to patients--check
for understanding.
ADVISE
CCM element: Provide personally relevant, specific
recommendations for behavior change.
Patient Level (patient-
provider interaction)
Office Environment
(standard operating
procedure)
Relate patient symptoms
or lab results to their
behavior, recognizing
patient‘s culture or
personal illness
model.
Develop list of
benefits of behavior
change/risk
reduction.
Inform patient that
behavioral issues are as
important as taking
medications.
Develop list of
common symptoms
that exercise, losing
weight or stopping
smoking can
improve.
Provide specific,
documented behavior
change advice in the
form of a prescription.
Arrange prompt
system to remind
physicians to advise
behavior change.
Share evidence-based
guidelines with patients
to encourage their
participation.
Provide prompt to
have physician
advise on importance
of calling if any
trouble taking
medication as
prescribed.
AGREE
CCM element: Use shared decision making strategies
that include collaborative goal setting.
Patient Level (patient-
provider interaction)
Office Environment
(standard operating
procedure)
Have patient develop
specific, measurable,
feasible SM goal for
behavior change.
Make sure patient
SM goals are in chart
and all team
members refer to
them.
Provide options and
choices among possible
SM goals.
Provide staff with
training in patient
centered counseling
or empowerment
training, which may
include videos on
motivational
interviewing or goal
setting.
Do above with input from
family or spouse, and with
support/assistance from
caregiver.
Have in-service from
expert on shared
decision making.
Share perspectives with
patient on what is most
important short -term goal-
- agree on a specific
target.
Incorporate videos on
patient role or choice
into practice, and
have patients see
prior to consultation.
Present evidence on
benefits and harms to
patient and let them decide
on course.
Develop multi-modal
intervention to
promote practice
change rather than
one
utilizing single
strategy.
ASSIST
CCM element: Use effective self management support
strategies that include action planning and problem solving. Help
patients create specific strategies to address issues of concern to
them.
Patient Level (patient-
provider interaction)
Office Environment
(standard operating
procedure)
Help patient develop strategies
to address barriers to change
(write on Action Plan form).
Select/develop SM
Action Plan form.
Implement patient discussion of
SM Action Plan a) during PCP
visit, b) immediately before or
after with nurse.
Adapt SM Action Plan
for your setting,
specifically focusing on
the 4 s‘ (size, scope,
scalability and
sustainability) in
planning any office
restructuring.
Refer patient to evidence based
education or behavioral
counseling--individual or group.
Develop specific plan to
enhance SM
resources—by
addressing the
REAIM dimensions-- to
make sure you are
addressing all key
issues for panel wide or
community impact.
Elicit patient‘s views and plans
regarding potential resources
and support within family and
community.
Make sure blank action
plan forms are
in each exam room.
Use planned interactions to
support evidence based care.
Give care that patients
understand and that fits with
their cultural background.
During follow-up visits, review
progress, experience,
concerns; renegotiate goals
and revise action plan.
ARRANGE
CCM elements: Follow-up on action plans.
Follow-up on referrals.
Establish two-way communication and partner with
community groups to improve services and linkages.
Patient Level (patient-
provider interaction)
Office
Environment
(standard
operating
procedure)
Give patient copy of SM Action
Plan.
Develop
collaborative
process that can
facilitate
communications
and
support with other
practices.
Follow-up call to patient within
a week after visit as ―booster
shot‖ for SM Action Plan.
Develop follow-up
checklist / prompt
to
make sure follow-
up is provided.
- E-mail follow-up or brief letter
restating plan and inviting
questions.
Include blank on
action plan form for
follow-up date.
Arrange for patient to contact
specific community resources
that could support their goals.
Follow-up with goals set in
action plan at each non-acute
visit.
Adapted for Self-Management Support Improvement
Improvement Goal: All chronic illness patients will have a Self-Management (SM) Action Plan informed by
and including all the 5 A‘s elements (Assess, Advise, Agree, Assist, Arrange). The 5 A‘s Behavior Change
Model is intended for use with the Improving Chronic Illness Care Chronic Care Model (CCM).
Five A’s Change Concept and Strategy Tables1
1Source: Glasgow, 2002. Community level strategies omitted.
6. Theory & Models: 5A‘s Model (con‘t)
Source: Bartholomew, 2001.
7. Matrix of Change Objectives: Intervention Mapping
Personal Determinants
Environmental
POs Knowledge Self-efficacy
Skills Outcome expectations / attitude Perceived norms Social support
PO1. Patients makes committment to be adherent PO2. Patients takes medicine correctly and on time
Ki. Describe why, how and when to take meds correctly (name of pill, time, # pills, with/without food) Kii. List situations that make taking meds on time difficult Kiii. State importance of disclosing epilepsy status to family members to help with med adherence Kiv. List cues to action (memory epilepsy) for taking meds correctly (e.g., by toothbrush, pill box, at mealtimes) Kv. List ways to take meds discretely either at home or away from home Kvi. Describe why and how to correctly make up for a missed dose(s) Kvii. State reasons to talk w physician if missing doses Kviii. List side effects and state that most will diminish over time
SEi.Expresses confidence in ability to take meds as prescribed SEii. Expresses confidence in ability to take meds discretely if needed SEiii.Expresses confidence in ability to use cues/memory epilepsy SEiv.Expresses confidence in ability to make up a missed dose(s) correctly SEv. Express confidence in ability to overcome side effects
Ski.Demonstrates how to take meds correctly Skii. Demonstrates how to take meds discretely Skiii.Demonstrates how to use cues/memory epilepsy Skiv. Demonstrates how to make up a missed dose(s) correctly SKv.Demonstrate ability to overcome side effects
OE. I Expects that by taking meds correctly, patients will be better able to improve/maintain health status OEii. Expects that disclosing epilepsy status to family members, will help with med adherence
PNi. Recognizes that other patientss with epilepsy take meds correctly PNii. Recognizes that other patients with epilepsy use memory cues PNiii. Recognizes that other patients with epilepsy make up missed doses correctly PNiv. Recognize other patients with epilepsy experience and overcome side effects
SSi. Physician/Family members / caregiver / friends reminds patients to take meds correctly SSii. Physician / Family members / caregiver / friends help patients to use memory epilepsy SSiii. Physician / Family members / caregiver / friends help patients make up missed dose(s) correctly SSiv. Physician / Family members / caregiver / friends help patients overcome side effects
PO3. Patients has medication readily accessible (at home and away from home. PO4. Patients keeps routine clinic appointments
Adherence matrix (abbreviated)
PATIENTS
• Diagnosis of epilepsy (> 18 years of age); not newly diagnosed
• English speaking
• Able to complete the screening tool (no motor disorders (e.g.
hemiplagia or quadriplegia), learning difficulties, and
psychiatric/behavioral problems (e.g. autism and attention deficit
disorder) that would inhibit ability to use MINDSET or practice self-
management activities.
HEALTH CARE PROVIDERS
• Designed for use by health care providers who interact with
patients in the clinical encounter :
• specialists (epileptologists / neurologists),
• nurse educators, and
• health educators.
Target audience …
Context & Flow …
Develop action plan : Seizure, Medicine, Lifestyle, Next visit,
Introduction
HCP confirms data with patient
Enters Screening Questions
(My Profile)
Reviews DSS advice and fact sheets
(expert advice and patient testimonials)
Reviews patient report
(My Plan)
Refers to communication cues (reinforcement,
check barriers, resources)
PATIENT
HCP & PATIENT
Reviews patient report
(My Plan)
Discuss issues identified as problem
HCP
HCP &
PATIENT
Printout action plan
Refers to media in DSS as needed for teaching –
text, video, websites
DSS generates on-line report
Reviews data and recommended goals
Log in WAITING
ROOM
DOCTORS
OFFICE
MINDSET
Epilepsy Decision Support PDA
SIP10-012 (Begley/Shegog)
Top Level Clinic flow
Archos Android 101 Tablet
Delivery Platform …
Interface: My Profile
Interface: My Profile
Interface: My Profile
Interface: My Profile
Interface: My Profile
Interface: My Profile
Interface: My Profile
Interface: My Profile
Interface: My Plan …
Interface: My Plan …
Interface: My Plan …
Interface: Action Items …
Interface: Action Items …
Aims
1. Develop a ‗proof-of-concept‘ of a Management
Information & Decision Support Epilepsy Tool
(―MINDSET‖) to provide real-time self-management
decision-support to patients and health care
providers in specialty neurology clinics.
2. Evaluate the usability and feasibility of this strategy.
Usability: Sample
Table 1. Demographics of sample (n=8) %
Age Range (years) 36 - 53
Gender Male 33
Female 66
Race/ Ethnicity Hispanic 33
White 33
Black 33
Marital Status Complex partial 33
Grand mal 16
Simple / complex partial 16
Petit/grand/simple partial 16
Computer access Home 80
Work 33
Friends 16
Library 16
Don’t Use 16
Computer Use 2-4 hours per day 50
4-6 hours / day 16
6+ hours / day 16
Don’t Use 16
Usability: Sample
Table 1. Percent agreement regarding usability parameters of each MINDSET section
and the total MINDSET program.
MINDSET Usability Parameters
% Agreement by section
My
Seizures
(n=6)
My
Medicine
(n=5)
My
Lifestyle
(n=5)
My
Plan
(n=4)
Total
program
Likability (a lot / a little) – all components of section 83 100 80 100
Ease (Very / kind of) – entire section 100 100 100 100
Time – just right 100 100 100 75 66
Helped me to think carefully about my …
[seizures/meds/lifestyle] 100 100 100 100
Helped me to think carefully about how I manage …
[seizures/meds/lifestyle] 100 100 100 100
Will help me talk to my doctor or nurse about my …
[seizures/meds/lifestyle] 100 100 100 100
Help with better management 100
Trustworthy / credible 100 100
I knew and / or understood most of the content 100 100 100 100
I knew and / or understood most of the words 100 100 100 100
I needed help to answer questions in this section 33 75 40 50
Tell other patients to use MINDSET 100
More useful than other surveys used in the clinic 100
More useful than other seizure programs 100
Would use again in the clinic visit 100
Would tell another patient to use this program 100
Benefits
1. Patients rated MINDSET highly on most usability parameters: ease, likeability, credibility, understandability, appeal.
2. They appreciated the opportunity to thoroughly review their epilepsy management…
3. … to receive advice …
4. …and to organize their thoughts prior to the clinic encounter.
“The information and seizure history for the doctor is great…”
“ I love the advice sections
“Helped condense my thought and organized any questions I might have.”
“It makes me look @ the probs in my lifestyle/mood.”
“…the advice sections were really useful for me”
“Opportunity to remember everything to discuss with doctor”
“Very helpful in condensing my thought and organized any question I might have to the physician.”
Barriers
2. When patients required assistance it was due to technical difficulties delayed system responsiveness (rather than the need to clarify questions).
“Questions seemed to have repeated. Lump these similar questions together”
Table 3. Percent agreement regarding functional components Describe how you feel about each of the elements of MINDSET … % Agreement
Like entire program 100
Like the colors 100
Like the buttons and slider bars 50
Like the hand held device 100
3. Patients advocated the use of MINDSET but suggested the need for patience for data entry due to the extensive data input.
1. Patients reported that the questions (behavior and self-efficacy) seemed repetitive.
“Its fine, it’s going to take time and patience. Some people will like it and some won’t; that’s the way things are. But for the most part it does work. I believe in patience and what this can do for people.”
Study alternative hypotheses Usability HA: Patients and HCP’s who use “MINDSET” will rate it positively (>60%) on parameters of ease, acceptability, credibility, and interest, feature ratings, user problems. Feasibility HA: The “MINDSET” program will be acceptable and usable within the context of the clinic visit including perceived time-on-task, and minimal disruption to usual care activities. Correspondence HA: Within a clinic visit MINDSET cues will correlate highly (> 0.7) with actual patient-provider communication. Impact HA: Patients who use MINDSET will report discussion of salient treatment factors, acceptable physician communication, and shared control of management, and improved attitudes toward the use of computers for learning or health care.
Feasibility: Ongoing
Decision-support shows promise in facilitating the:
• Operationalization of self-management constructs for screening, management, and education
• Application of clinical guidelines
• Usability data indicates potential for clinic use & patient-provider encounter
• Feasibility under study
Conclusions
Ross.Shegog@uth.tmc.edu Charles.Begley@uth.tmc.edu